Epileptic dd and cooler temps at WDW

[forr2grls]

Hi all! Hoping someone will be able to answer a question for me.We will be leaving for Disney in a couple of weeks. I know the temps can vary this time of year.My concern is that a trigger for her seizures is not only hot weather,but cool as well. Are there heated areas where we can wait to board a ride?Should we just bring or have her wear lots of layers(which could result in her being over-heated)? Any help appreciated!


Paula

 

[ducklite]

Hi all! Hoping someone will be able to answer a question for me.We will be leaving for Disney in a couple of weeks. I know the temps can vary this time of year.My concern is that a trigger for her seizures is not only hot weather,but cool as well. Are there heated areas where we can wait to board a ride?Should we just bring or have her wear lots of layers(which could result in her being over-heated)? Any help appreciated!


Paula

There are no heated waiting areas, and many waiting areas aren't cooled either. That said, this little cold-snap we've had is highly unusual, and not at all normal. mid-December temps are usually mild and quite comfortable in the low to mid-70's every day.

As far as putting her in layers, that's a good idea, just have her wear as many as you do, and if you peel off a layer, peel one off her too...

Anne

 

[SueM in MN]

I'd agree that layers are a good idea. That way you can add or subtract layers as needed. That might be important as you go between warm buidlings and outside.
Some other things to think about:
- even if the lines were heated, you will be spending a fair amount of time outside, so you have to plan for that.
- once the sun goes down, the temperature might drop quite a bit (although if the temperature is in the high 70s, it won't be that cold when it drops).

Some other things we have found over the years is that dehydration and change in schedule can really cause problems with our DD's epilepsy. You obviously can't control the temperature that much, but taking care of the things you can control might help to keep the seizure threshold from 'tilting' toward seizures.

 

[grlzmom]

I'd agree that layers are a good idea. That way you can add or subtract layers as needed. That might be important as you go between warm buidlings and outside.
Some other things to think about:
- even if the lines were heated, you will be spending a fair amount of time outside, so you have to plan for that.
- once the sun goes down, the temperature might drop quite a bit (although if the temperature is in the high 70s, it won't be that cold when it drops).

Some other things we have found over the years is that dehydration and change in schedule can really cause problems with our DD's epilepsy. You obviously can't control the temperature that much, but taking care of the things you can control might help to keep the seizure threshold from 'tilting' toward seizures.

I agree with all of this, especially the staying hydrated. Our 15 year old dd has seizure disorder and we have done WDW frequently with her, but are very careful to make sure she gets enough rest/sleep. Sometimes we forget with long days in the parks, constant stimulation and always on the go. We have to make sure she is eating regularly and catching her zzzzs at night.

We always make sure to pack extra meds in case we lose/misplace/drop a dose on the floor

Kind of off topic, but has anyone had a child with seizure disorder on Keppra? Dd was recently placed on Keppra after breaking through on Lamictil and previously breaking through on Depkote and Tegretol. She is having all kinds of visual problems with the Keppra and the neurologist says "not to worry" it will resolve as she acclimates to the meds.

I feel so frustrated for her. After years of being told she will grow out of it, her epileptologist (referred from the neurologist) says she will most likely be on meds for life and our goal should now be good seizure control vs. complete control.

I hope you have a great time on your Disney trip.

 

[steffali]

I agree with all of this, especially the staying hydrated. Our 15 year old dd has seizure disorder and we have done WDW frequently with her, but are very careful to make sure she gets enough rest/sleep. Sometimes we forget with long days in the parks, constant stimulation and always on the go. We have to make sure she is eating regularly and catching her zzzzs at night.

We always make sure to pack extra meds in case we lose/misplace/drop a dose on the floor

Kind of off topic, but has anyone had a child with seizure disorder on Keppra? Dd was recently placed on Keppra after breaking through on Lamictil and previously breaking through on Depkote and Tegretol. She is having all kinds of visual problems with the Keppra and the neurologist says "not to worry" it will resolve as she acclimates to the meds.

I feel so frustrated for her. After years of being told she will grow out of it, her epileptologist (referred from the neurologist) says she will most likely be on meds for life and our goal should now be good seizure control vs. complete control.

I hope you have a great time on your Disney trip.

Hi My DD was on Keppra and Depakote for some time. I can't really help you with the visual problems as she had loss of periphial vision(sp) when her shunt malfunctioned. I can tell you that she had MOOD swings on Keppra, it was kind of scary. The neurologist took her off of it because she broke through with seizures. They put her on Trileptal and Depakote and again she was breaking through so now she is on Topomax and Trileptal.SHe hasn't had a seizure since Sept. (I am keeping my fingers crossed)

Depakote alone worked for 10yrs with no seizures but unfortunalty after she had surgery for her shunt replacment she started getting seizures again. It has been hard we thought she had out grown them after soooo many years but I guess you never know. This will be our first trip since she started having seizures again and I will keep her DIASTAT with me at all times. Good Luck to you and your Daughter

 

[grlzmom]

Hi My DD was on Keppra and Depakote for some time. I can't really help you with the visual problems as she had loss of periphial vision(sp) when her shunt malfunctioned. I can tell you that she had MOOD swings on Keppra, it was kind of scary. The neurologist took her off of it because she broke through with seizures. They put her on Trileptal and Depakote and again she was breaking through so now she is on Topomax and Trileptal.SHe hasn't had a seizure since Sept. (I am keeping my fingers crossed)

Depakote alone worked for 10yrs with no seizures but unfortunalty after she had surgery for her shunt replacment she started getting seizures again. It has been hard we thought she had out grown them after soooo many years but I guess you never know. This will be our first trip since she started having seizures again and I will keep her DIASTAT with me at all times. Good Luck to you and your Daughter

Yes, we are definately having mood swings on the Keppra, and I think its compounded by her age (15.5). She actually went 3 years with no seizures and we started to feel safe. Then puberty/menstruation came and the meds all stopped working. The doc talked about some newer meds, but a side effect of a couple of the newer ones is weight loss and she is only 90 pounds at 5 foot 1, so who knows. I feel like we live on a roller coaster. Every time we start to relax a little, the seizure monster comes back for a visit. We too carry the diastat and the school nurse keeps it on hand for dd.

No seizure since September is GREAT!! I hope your dd continues to be seizure free and that you have a WONDERFUL time in Disney.

 

[SueM in MN]

My DD's neurologist wanted to switch her to Keppra, but I was afraid of the mood swings and other side effects. She's not able to speak, so if she is having problems, we have to kind of play 20 questions with her to try to figure out what is wrong.
She's been on Lamictal for many years, and does still have 2-3 seizures a month. That seems to be the best we can get.
The only other medication she has been on was Depakote, which caused her to go into liver failure. That was pretty scary, so we would rather deal with the Lamictal than worry about what kind of bad reaction she might have from a new med.

 

[steffali]

Yes, we are definately having mood swings on the Keppra, and I think its compounded by her age (15.5). She actually went 3 years with no seizures and we started to feel safe. Then puberty/menstruation came and the meds all stopped working. The doc talked about some newer meds, but a side effect of a couple of the newer ones is weight loss and she is only 90 pounds at 5 foot 1, so who knows. I feel like we live on a roller coaster. Every time we start to relax a little, the seizure monster comes back for a visit. We too carry the diastat and the school nurse keeps it on hand for dd.

No seizure since September is GREAT!! I hope your dd continues to be seizure free and that you have a WONDERFUL time in Disney.

Well we can't blame puberty for my DD seeing as she is 20 years old
I know that one of the side effects of Topomax is weight loss which in our case it IS A VERY GOOD THING!!! With my DD being on Depakote for soooo many years she has gained so much weight. I am happy they finally took her off of it. I am waiting for the Topomax to kick in
I have Diastat, the school nurse, the nurse at camp and my parents.... I hope to never have to use it

 

[grlzmom]

Well we can't blame puberty for my DD seeing as she is 20 years old
I know that one of the side effects of Topomax is weight loss which in our case it IS A VERY GOOD THING!!! With my DD being on Depakote for soooo many years she has gained so much weight. I am happy they finally took her off of it. I am waiting for the Topomax to kick in
I have Diastat, the school nurse, the nurse at camp and my parents.... I hope to never have to use it

Hmmm, I always thought my dd was quite a chubby toddler/preschooler compared to my other dds at that age. Perhaps it was all those depkote sprinkles she was getting (like five years worth). Dd had to have the diastat once and it wasnt pleasant to say the least. She has been in a horrendous mood all day after having been picked up from school nurses office being postictal from an unwitnessed seizure. I called the neuro and practically begged him to get her off the keppra, at least try something else. If she drops some weight I can supplement that with ensure, but the mood swings are getting a little scary.

I really hope the Topomax is a great med for your dd.

 

[grlzmom]

My DD's neurologist wanted to switch her to Keppra, but I was afraid of the mood swings and other side effects. She's not able to speak, so if she is having problems, we have to kind of play 20 questions with her to try to figure out what is wrong.
She's been on Lamictal for many years, and does still have 2-3 seizures a month. That seems to be the best we can get.
The only other medication she has been on was Depakote, which caused her to go into liver failure. That was pretty scary, so we would rather deal with the Lamictal than worry about what kind of bad reaction she might have from a new med.

That is very scary about the depakote/liver failure. Sometimes it seems as though the risk of the treatment is worse than the disease itself. I cant imagine how hard it is to figure out what is wrong with your kiddo when they cant speak. Is she able to sign or use a board or anything? Just curious, and sorry if I am intruding

I am glad the Lamictal works for you. We were so hoping that would work for dd. I was so sad when it didnt. The only positive thing is that the Keppra is less expensive, as the Lamictal was costing us 500 dollars a month out of pocket as the insurance wouldnt cover it as they said it was NOT a "pediatric formulary drug", ugh.

I really appreciate all the feedback from fellow dissers!!!!

 

[steffali]

My DD's neurologist wanted to switch her to Keppra, but I was afraid of the mood swings and other side effects. She's not able to speak, so if she is having problems, we have to kind of play 20 questions with her to try to figure out what is wrong.
She's been on Lamictal for many years, and does still have 2-3 seizures a month. That seems to be the best we can get.
The only other medication she has been on was Depakote, which caused her to go into liver failure. That was pretty scary, so we would rather deal with the Lamictal than worry about what kind of bad reaction she might have from a new med.

Wow liver failure, I could imagine how scary that was. My DD was on Depakote for so many years with lots of blood tests, thankfully no liver damage. I hate it when they start to wean off of one med. to another I am always keeping my fingers crossed.

 

[forr2grls]

Thank You to those who have responded. I know all too well about dehydration and how it affects dd's seizures. And of course all those other darn things that lower her threshold-too tired,hungry,excited and the list goes on.

DD has been on keppra(which was the WORSE med ever for her,she had bad mood swings,we called it the kepp-rage)Depakote made her gain 14lbs in 6months(when she was 2yrs). She has 3 to 4 seizures roughly in a month. She is on Carbatrol-been on that since she started seizing,Dilantin-weening off,and generic(grrrrr)Zonegran. And we have Diastat on hand at all times. May I ask what kinds of seizures your children have? Ashlie has complex partial with secondary generalized tonic clonic.


Paula

 

[grlzmom]

Thank You to those who have responded. I know all too well about dehydration and how it affects dd's seizures. And of course all those other darn things that lower her threshold-too tired,hungry,excited and the list goes on.

DD has been on keppra(which was the WORSE med ever for her,she had bad mood swings,we called it the kepp-rage)Depakote made her gain 14lbs in 6months(when she was 2yrs). She has 3 to 4 seizures roughly in a month. She is on Carbatrol-been on that since she started seizing,Dilantin-weening off,and generic(grrrrr)Zonegran. And we have Diastat on hand at all times. May I ask what kinds of seizures your children have? Ashlie has complex partial with secondary generalized tonic clonic.


Paula

Dd has partial complex with progression to generalized (tonic clonic). She has usually flurries. Goes months with nothing, then has a bunch in a short period of a couple of days. They are worst in October and February (who knows why?) Her seizures come from the right parietal area of her brain. They have gotten worse and last longer as she has gotten older (with a three year seizure free period before hitting puberty).

kepp-rage, thats a good one. Thats about how we are feeling in the house right now

Happy thoughts to you all.

 

[steffali]

My DD used to get bad Grand Mals where she would have to be rushed to the hospital each time. THen she was seizure free for 10yrs. and now she started getting petit mal (I believe) SHe has been averaging seizures about every 2-3 months.
I hated Keppra for the mood swings but she also kept having seizures.

 

[ducklite]

My son was on Depakote for about a year, it wasn't a good drug for him at all. We didn't have liver problems, but the mood swings were out of control and finally led to a very scary psychotic break. He was switched to Topamax which worked, but wasn't the best for his situation, and about six months he came off of that. He's been taking Risperdol all along as well, and that works well for him with minimal side-effects.

Anne

 

[bwk97]

I'm fairly new to the boards and this is the first post I've seen about seizures disorders

I would just like to ask if anyone has ever taken thier children on the Disney cruise?
My son has a myoclonic seizure disorder and has seizures on a daily basis, he has only ever been hospitalized once (6 weeks of age/he is now 5) his neurologist is not happy about the idea but thinks it would be o.k. Any advice or input on this would be greatly appreciate.

Lori

 

[forr2grls]

Lori,

May I ask why neuro is not happy about the idea? We have never been on a cruise,so can't help you there. My advice would be just to do the same as you would at home in the event of a seizure.


Paula

 

[grlzmom]

I'm fairly new to the boards and this is the first post I've seen about seizures disorders

I would just like to ask if anyone has ever taken thier children on the Disney cruise?
My son has a myoclonic seizure disorder and has seizures on a daily basis, he has only ever been hospitalized once (6 weeks of age/he is now 5) his neurologist is not happy about the idea but thinks it would be o.k. Any advice or input on this would be greatly appreciate.

Lori

Our dd has been on the Disney Magic 7 times. We make sure to send in a medical form ahead of time (fax in minimum two weeks before sailing), and we also take a copy with us, as frequently they have misplaced it. We also have spoken with the counselors onboard to make sure they are aware of her seizure disorder. It has always been documented in the computer. Katie also wears a medical alert bracelet.

I am not sure why your neuro isnt too happy about it? I know that safety in the water is extemely important with seizure disorder, and we are ever vigilant with dd swimming/snorkeling. Last cruise, she was even able to go on the teen "wild side adventure" (which includes kayaking, snorkeling, etc) and the counselors took one extra staff member with them "just in case" for Katie. I never expected them to accomodate her needs as this was an optional adventure, but we were very pleased with disney as they went above and beyond on our part to make Katie's experience even more magical. I guess she had been in the teen club expressing her desire to go and they let us know that it would be doable. We do have to special order from the pharmacy spf100 sunblock for Katie before we cruise as she is extremely sun sensitive (especially with the meds), and that caribbean sun is very strong. We take extra meds, plenty of bottled water, limit her caffeine intake, make sure she gets plenty of rest (you know, trying to keep that seizure threshhold tipped in our favor) and so far have been lucky. We cruise again in January and I really hope her doc gets her under a little better control before then.

We have not needed to use the medical facilities on board regarding Katie, but one of our other dds was seen three times during a cruise by the shipboard doctor and we thought the facilities were adequate and they have handled plenty of emergencies.

Not knowing your specific situation, it would be hard to offer an opinion, but we have met many families with kids who have special needs and have had a wonderful time on the disney cruise.

Feel free to pm me if you decide to go and have any specific questions.

Good luck to you...

 

[bwk97]

My neuro feels that we should travel to places that we would have access to a hospital if needed. It is comforting to know that the medical facilities are more than adequate on the cruise, that was my bigest concern.

I really appreciate you guys taking the time to respond to my question thank you.

Lori

 

[steffali]

I have never been on a cruise with my DD, but she does usually need to be hospitalized after having a seizure so that is my biggest fear. However all of her Dr.'s have always told me to go but I am too nervous